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I remember when I was first diagnosed with rheumatoid arthritis, I desperately wanted to feel the way I felt before I became ill. Free of pain, fatigue, medications, and doctor’s appointments.
Then the pandemic hit, and now, I crave feeling the way I did before this shit show started in early 2020. Life was a bit easier; I felt better physically and emotionally.
I’ve been stuck in this COVID funk for what feels like forever. I recognize I am languishing. In these past three years, I have seen my health decline and myself age in almost rapid ways. My body feels different. My mind feels different. My soul feels different.
Before the pandemic I was flourishing. According to my rheumatologist, I was so close to remission. But then it all changed…
The Toll of COVID on My Health
Over the last three years, a lot has happened that hasn’t been good for my rheumatoid arthritis or overall health, including surgeries, tests, a cancer scare, a new diagnosis, periods of drawn out illness, and medication changes.
It’s safe to say that life has thrown a lot of shit at all of us these last three years — and it has had a profound impact on my physical and emotional health and habits.
- I am lonely and yearn companionship but also want to be left alone
- I’ve become isolated from friends and family (It’s been over three years now since I’ve seen my dad who lives across the world.)
- I am angry and bitter
- I’m exhausted and burnt out
- I lack motivation
- I feel numb and empty inside
- I have become more sedentary
- I have increased my bad habits
- I put on weight that I worked so hard to lose
- I feel disconnected from the world, shut in and forgotten about.
My medications and my disease make me high-risk for COVID complications, which means to keep myself safe, I’ve had to set boundaries with others. Unfortunately, this has opened my eyes to how some people view the chronically ill.
- I’ve lost friends because they made fun of me wearing a mask or getting vaccinated.
- I’ve lost respect for people who’ve shown their worst colors and lack of care for others during the pandemic.
- I’ve seen medical professionals and treatments that give me a quality of life mocked by people who’ve never needed them.
- I’ve been told that people get sick and die all the time. It’s not their problem to help keep others safe.
- I’ve been told I am brainwashed because I asked others to wear a mask or because I believe in modern medicine.
Finding the Good in COVID
There were also many good changes since the pandemic — things that gave me hope and joy over the last three years. Without them, I probably would have lost it.
I’m incredibly grateful for advocacy to keep me going and give me something to do in the darkness. Over the last three years, I have definitely become more passionate about advocacy and health research.
I was also educated others about autoimmune diseases and what a respiratory infection can mean for us. Doing so got me featured on radio, tv, and web throughout the course of the pandemic.
Before the pandemic I would have to haul myself into the doctor’s office weekly for some minuscule need. Now I can chat with my doctor while sitting on the beach or in my pjs from home. With telehealth, I can spend less time being a patient and more time doing things I want to or need to do.
Virtual options in the form of volunteer meetings and conferences have also helped make life easier with RA. I can pace myself, multitask (like exercise during meetings with the camera off, of course), and rewatch sessions or meetings to soak up all the information.
I went 2.5 years — the longest period of my life — without having a respiratory infection. Though COVID finally caught up with me when I took my son to a soccer game. The mom guilt of not doing much for my child was gnawing at me and I was given free tickets.
Mental Health Support
I changed my antidepressant because I felt the one I was using at the beginning of the pandemic wasn’t working for me. It has helped — my anxiety has decreased and I’m sleeping better — but it’s not a total solution for the emotions I’ve been going through lately. But switching medications wasn’t the only thing I did, I also reached out to my clinical social worker to talk about some of the uncomfortable emotions I was experiencing.
Joy in a Quieter Life
A lot of what I did before the pandemic I can’t really do anymore — either because my favorite hang outs went out of business or became too costly or posed a potential risk to me. And I’ve made peace with that, finding a new joy in a quieter life.
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